Keep trudging along

I ended up spending the night in Hannah’s room last night.   I wanted to be closer to her if she had any more choking spasms in the night plus I wanted to give my husband a break and get some sleep.   Little did I know that he kept the monitor on anyway just in case I didn’t wake up.  I was sleeping two feet away from her — just shows what a loving spirit and dad he is.

She did end up having about six choking episodes last night.  One really bad one that lasted about a minute, two medium ones, and three smaller ones (fortunately, she was able to resolve that within just a few seconds in her bed). 

Right now, she is in her crib sleeping, and I am watching her on the monitor.  Wondering what tonight brings.  Will tonight be the night she is able to sleep without a choking episode again, and we can get back to “normal?”

We have a busy day tomorrow.  She has physical therapy tomorrow morning, only half of a session because she has a meeting with the GI doctor to work out these reflux issues after that.  Fortunately they are in the same floor.  Right after that, we have to immediately go downtown to TCH to see the Rehabilitation doctor.  This is an important meeting because therapy for Hannah is her biggest tool for survival right now.  The more she can learn now, the longer we can keep her with us, and the more time we have to find a treatment or cure for her.

I wish these two important doctor visits weren’t happening while she is really congested and not feeling well.  But it isn’t something that we can really postpone because, especially with the Rehab doc, it could take months for another consultation with him.  And we really need to get the reflux understood and under control — we don’t know how much this is affected her breathing, feeding, and talking issues.

Here to hoping we have a good night tonight!